Hip Stability Shorts tutorial

Kids with Down syndrome have low muscle tone.  This means that they do the splits very easily.  When our children are first learning to crawl and walk, they often need some hip support so that they can keep their legs together while learning the skill.  They sell various types of shorts to do this, including Hip Helpers.  They are fairly inexpensive to buy (starting at $16.00/pair), but much cheaper to make, and they aren't that difficult.

I made the bear cub's when she was learning to crawl and didn't think I would need them again after she was up and going.  Today, the drama princess is having a birthday party at the skating rink.  We bought the nerdlet adjustable roller skates a few weeks ago and tried them out on all the girls.  The nerdlet and Darth Monkey took to them right away, but the bear cub started to immediately do the splits each time we put them on her, so I decided to make her a pair of hip stability shorts.

Here is what I did.  I measured the bear cub's waist, hips, the length from waist to knees, and how far up her legs that I wanted  the stitching to come.  I added an inch to the hip measurement for the width of fabric and two inches to the length.  I used a knit with good recovery, but I have used swimsuit fabric for more support when she was learning to crawl.  I used 1 inch elastic and cut it to her waist measurement - 1 inch. I had two small pieces of elastic so I just sewed them together for this.

I sewed the elastic to the wrong side.  Here I used a three step zig zag stitch, but you could just serge it to the top.

I folded the elastic over to the wrong side.

And folded the right sides together.

Sew or serge the sides together.  If you don't have a serger, make sure you use a strong thread and zig zag stitch so that it will stretch when your child moves instead of snapping the thread.

Hem the bottom and turn right side out.

Draw a line halfway across the measurement you took for how far up the leg it should be.

Sew a straight stitch on this line and secure both ends.

It was pretty easy and fast to do.  I tried them on the bear cub and she immediately tried to do the splits in them.  She simply pushed the leg parts up her leg until they were bunched there and she could have full movement again.  Luckily babies that are learning to crawl and walk haven't figured this out yet.  We'll see tonight if the bear cub will leave them down while we try her on the roller skates.

The Bear Cub Roars

The bear cub has her daddy's disposition and rarely gets too upset about anything, but when she does get angry, she definitely lets you know.  In this picture, she is about five months old (my mom took the picture and she hadn't figured out the date on her camera yet which is why it is dated before the bear cub's birth).  We were practicing rolling over which she never really enjoyed but tolerated and was mad that my mom kept flashing the camera in her face.

For practicing rolling over, I put a pillow under a long board so that there was a small angle for her to roll down and covered the board with the quilt folded over a couple of times for padding.

Down Syndrome Awareness Month

It's Down syndrome awareness month, and instead of inundating you with facts about Ds (and/or breast cancer), I thought I would share some of my favorite pictures of the bear cub.

Pre-writing worksheets

I recently read this post on http://pudgeandzippy.blogspot.com/, which is a neat little blog by a mom of two adorable little ones with Down syndrome.  I'm always on the lookout for things that will help my bear cub catch up or stay caught up with her peers and at her most recent ARD meeting, the bear cub's teacher mentioned specifically that we needed to work on her prewriting skills, so I made these worksheets.

It was really simple.  I just took card stock, drew out the lines, and cut them out 1/4 inch for the shape.  Then, I plan on laminating and she can practice her line drawing.  I also plan on making her name and possibly some squiggle/worm like shapes.  The nerdlet generously donated from her stickers to mark the lines.

I think it's a wonderful way to work on pre-writing skills and I imagine Darth Baby will get a lot of use out of them, too (if I can get her to stop just drawing on herself and her sisters).

The Bear Cub's Birth Story

Someone asked me about the bear cub's birth and I was going to just post a link to the story here and I couldn't find it.  I guess I never posted it here, so I went to my old livejournal account to repost it here.  Here is the story only modified slightly from the version that was written a few days after her birth.

Early on the day of her birth, I started telling everyone that I was going to have the baby the next day. I didn’t really have any signs, but I felt that I was ready after all. That evening, we went to visit Q’s grandmother in the hospital. She had come down to visit and in order to be here for the bear cub's birth, but had acquired pneumonia before coming down and ended up in the hospital. When we got to the hospital parking lot, Nerdlet started throwing up on herself. So instead of visiting, we went to Q’s parents in order to bathe and change her.

Afterward we visited there a little while before leaving. On the drive home, I had my first contraction at 9:16 pm. The obstetrician told me that my labor would be fast and the contractions would be stronger and faster than normal so that I need to come in at the first sign of a contraction and not wait and time them. So since our house was on the way to the hospital, we made a quick stop for my bag and breast pump and headed in. By the time we got to the hospital less than 30 minutes later, I had had 8 contractions and they were coming so fast that I could only take 3 to 10 steps before another one started. When I got to L&D and they checked me, I was 6 cm dilated. They admitted me and moved me to a delivery room and by the time I got there and they checked me again, I had progressed to 7 cm. They asked me if I wanted an epidural and I said yes as at this point it felt like I was having one big contraction that didn’t end. Everything I had read and heard before indicated that being induced causes harder and more painful contractions than going into labor naturally. I can tell you that for me that this was completely not true. The contractions I was having were much worse than the ones I had with my first pregnancy, which was induced.  I didn't end up getting the epidural, though, as they didn't make it to me before the bear cub was born.

The doctor on call came to see me and asked me if I was ready to have the baby at 11:50 pm and I joked that my sister could get her wish for me to have the baby that day instead of the next because her ex-boyfriend was born the day after, and the doctor said that I was ready and I could push the baby out then. I told her that I wanted the baby to come healthy and that it didn’t matter which day. At this point the baby’s heart rate spiked and shot down and the doctor told me to push her out now. The nurses helped me into position and I didn’t get her out and the baby looked to be in even more danger and the doctor said she needed to come out now or we’d have to do a C-section. I pushed her out with the next contraction at 11:55 pm, and she came out in her water sack fast, quick and healthy.

When she came out, one nurse took her to clean her up and the doctor and the rest of the nurses were crowded around the table whispering about something frantically. I asked what was going on and none of them seemed to hear me. I became more insistent and started to move out of my position to move toward them. The doctor told me that I had a vasa previa. I asked her what that meant and she briefly explained that the placenta had not been attached to my uterus, but only to the water bag and that it was amazing that the baby had lived and she wouldn’t have if she hadn’t come that quickly. She sent the placenta to the pathology lab and told me that we were a case study. I have since looked it up and in apparently most of these cases the baby is born dead and they find out that vasa previa was the cause afterward. The babies that live were delivered by C-section ahead of time. So my little bear cub is a miracle baby. I did not have time to share my birth plan with the doctor, and I found out after I delivered that she gave me an episitomy to get the baby, but considering it after I read about vasa previa, I can only be grateful that we got her out so quickly.

It turns out that it looks like my bear cub also has Down syndrome. In another miracle, she had no organ problems yet, did not need to go to NICU, and her blocked kidneys had even cleared. She was jaundiced and had phototherapy, and she responded well to it and we went home after 2 days in the hospital.

When we went to the two-week appointment is when the doctor heard something funny in her heart beat.  We went to the cardiologist at that point and that is when they discovered the two holes in her heart.

Starting School Followup

One of the first things you realize when you have a child with Down syndrome, is that the Ds isn't a big deal.  Your child will laugh, cry, sleep, love, learn, grow, and do everything else than all children do.  What is the big deal about having a child with Ds?  Other people and their prejudices are the real issue.  They are the so-called friends and family that don't realize that a person with Ds is a person and deserves to be treated like any other person.  They are the people who use the 'r' word and refuse to put themselves in the shoes of those they are maligning and put a stop to that hate language claiming that they can use any word they wish and that other people are being just too sensitive and all those same arguments you would hear a member of the KKK use to defend their use of the 'n' word. They are the people in the school system that believe that your child doesn't deserve to learn and be educated with other children.

I've said that I was going to post about the bear cub starting school, but I kept putting it off.  Her actual month-and-a-half of school was great and helped her a lot, but the getting to that point was enormously stressful and I thought that writing about it would bring it all back to mind so I've been avoiding it a little.  I had written about the somewhat painful meetings with the school prior to the evaluation here.

The bear cub with her daddy at the time of her evaluation waiting to schedule her first eye surgery.

The evaluation was interesting.  We went in to the district office and they again didn't have any notice that I was going to be there, but they gave me a name tag anyway and called the therapists who apparently did know I was coming.  The therapist came and I was holding the bear cub's hand so that she would not dawdle or run off.  They asked me if she could walk unassisted.  I have a friend who said she would have been offended already, but I understand that this is a reasonable question since a lot of our kids aren't walking well at three and they also deal with a lot of disabilities and not just Ds.  I let go of our hand and the bear cub kept the speed and walked all the way down the long hall without getting distracted.  When we entered the testing room, they immediately went to work on her.  One of the therapists started testing her while the speech therapist asked me questions about her abilities.  The bear surprised me immensely by showing off.  She showed that she knew things that we hadn't even worked on like opposites and matching.  She stacked the blocks high like she did it all the time (at home she would stack maybe three before pushing them down).  She also used a lot of signs like asking them to dance and then getting up to do so.  She also didn't have an accident and went potty on the little one that they had there (at that point she was just getting to the point of being fairly consistent and I was a little worried about this).  She also came and hugged me around the neck from behind when moving around.  After about an hour of working with them, she was done.  She signed 'all done', hid her head behind a book case, and wouldn't look the therapists in the eyes.  The therapist finished with the questions and we left and I actually felt pretty pleased with how it went.

I tried to contact them two weeks later and the receptionist would not even considering putting me through and told me that they would contact me.  I verified that they had my cell number and that they would call me there.  The next day they apparently called the message number (Q's mostly unused cell number) that I specifically told them not to use and left a message telling me that the eval was done and that they would email it to me.  I didn't listen to this message until later and I never received an email from them.  After another week I called our home school and the phones were all down.  Later that same day, I got a phone call from the speech therapist and special needs coordinator for our home school, Valerie (possibly not her actual name).  Valerie told me that she was calling to remind me of the IEP meeting that I supposedly agreed to the next week.  I explained that I knew nothing of this meeting and that I hadn't even received the evaluation report.  She told me that she would call me back.  She called me back in less than an hour and told me that she had a copy of the evaluation report and would make me one and she could email it to me or I could pick it up at the school.  I told her that I would be more than happy to pick it up and that I was taking the girls to the park and would do so on the way.  She told me to call her in the parking lot and that she would bring it to me so that I wouldn't have to unload the girls.  This amazing woman came to the parking lot and asked to meet my girls and was so nice about it all.  She even asked about having the nerdlet diagnosed (she may have shown a few spectrum type symptoms to her when Valerie tried to talk to her).

The bear cub and her sisters playing around the time of this conversation.

I read through the review while the girls played at the park.  The report was full of errors.  It referred to the bear cub by the name Julia at one point (that isn't her name).  At other points it referred to her as a he.  Throughout the entire report, it was filled with descriptions of a child or children that were clearly not my bear cub.  For example, it said that she was antisocial, violent, prone to fits, and didn't sleep well, none of which is true for the bear cub.  I showed the report to one of  the bear cub's therapists and she stated that it didn't look like any of it was right and joked that for once, it would be the school system that looked like idiots instead of the parents.  I considered using it as leverage for getting her what she needed since they couldn't argue on the basis of a completely untrue report, but when Valerie called me again to make sure that everything was set and asked if I needed anything else, I decided to mention it.  She said she would call the district and let them know and have the report changed.  The district speech therapist called me to ask me what the errors I found were, and I was busy and not feeling particularly inclined to help her, I mentioned a few of the errors and told her that I didn't have it in front of me but that the whole thing needed revision.  She stated that she would do so and email it to me, but again I received nothing.  I actually received the revised document from the bear cub's teacher the day before the meeting and most everything had been changed and was mostly correct.

The IEP meeting went well and I was fairly please with the goals and how they were to be addressed, though with only a short time before school let out, we wouldn't see any measurement of these goals.  Also, the teacher of her class that I liked retired when school let out so next year might be a whole different ball game. I did get a dirty look from my home school's principal when I pulled out the recorder, but I told her that I was under the impression that recording these meetings was standard and they scrambled to find the 8-track recorder so that they could record the meeting also (I exaggerate a little, but the cassette recorder they used was likely the first version and was for sale simultaneously with the 8 track recorders I think).  I was talked out of the school I wanted the bear cub to go to, but mostly because Michelle (actual name), the coordinator for that school, seemed completely uninterested in having anything to do with the bear cub and practically scoffed at my concern to keep her potty trained and not back in diapers.

The bear cub's first school bus ride.

School went well for her.  She brought some new pathogen home from school to enjoy and share with her sister each week and pretty consistently missed Tuesdays due to either diarrhea or fever.  She also seemed to have an accident each week at school.  When I confronted the teachers about this, they explained that because she needed a special potty that it had to be kept in the handicapped bathroom and about once a week it was occupied and they had to wait resulting in an accident.  Since this did not result in more accidents at home, I didn't really worry about it.  The only other big thing that I didn't care for was that they could only have a backwards facing car seat one way because the school bus used going the other way didn't have the seats far enough apart to accommodate the backwards facing seat.  I did like that they had a dedicated assistant (the lady in the picture above) that strapped the bear cub into the car seat and sat with her each day.  

I have the option of having therapy services over the summer through our insurance.  The school won't provide summer school or services until the bear cub shows significant lapsing so she's not getting anything through them this summer.  I've decided to take the summer off in regards to therapy.  I have had appointments two or more times a week pretty much since she was born and I've decided to give all of us a break.  I'm a little worried about the stress of school when it resumes in the fall, but I'm trying not to dwell on it for the time being.

The bear cub a few days ago.

When Is It Acceptable?

I went to Wal-mart today on the way home from Katie's 4 year appt at the doctor for milk and bananas. As I was getting bananas, an elderly lady wheeled up in her scooter and asked me for help. I got her the bananas she asked for and she turned to my girls and waved to them. The bear cub waved back and the lady said, "Oh what a beautiful Mongoloid child!"

I started to correct her, "She's not Mon.."

"Dear, I'm a nurse or I was before I retired in 1974, and I know a Mongoloid when I see one."

"She has Down syndrome. It isn't acceptable to use the term Mongoloid anymore. It's offensive." I told her.

"Everything has changed so much." She was shaking her head as she wheeled away.

One thing is true though, the bear cub sure is beautiful.

Starting School

In the process of just trying to get an appointment to get the bear cub evaluated for school, I learned a lot about how hard dealing with public school and ensuring that she get the best education possible was going to be.

First they gave me a hard time about showing up in the first place. They left me a message saying that I could not have an appointment because she was too young, even though I knew of more than one parent who was scheduled to be there that had a child younger than the bear cub. The lady that left this message did so after their operating hours and when I called immediately back, the receptionist gave me a hard time about calling after their operating hours and questioning the message in general. I still have this message on my phone.

Then when I did show up, although they had my name at the front desk to get a visitor's pass, I was not on any of their other paperwork. They were so very generous in allowing me to sit in on their information meeting, which I recorded. It was given by a speech therapist and gave me a lot of positive feelings about what to expect, until the meeting was over and they directed me to another room where the other personnel told me that what I heard wasn't true and that I must have misunderstood what was said. I basically was told I had two options: PPSC in a non-inclusive setting, which was 3 hours a day five days a week or Head Start which was inclusive, but in which I would get no therapy, which was all day five days a week. I was also told that putting my 20 pound little girl in a five point harnessed car seat was not going to be possible. The lady who knew about the Head Start Program basically told us this and then ran out saying that she was double booked and had to go to another school.

In addition to this, I had a wonderful conversation with the lady that scheduled my evaluation. She asked me what my concerns were. I was a little thrown by the question, thought a bit, and answered that I was concerned that my bear cub would not get the education she deserved which would help her live up to her potential so that she could be independent and have a good and happy life. The lady rolled her eyes at this and said she meant does she have any medical issues that need to be addressed. I explained that she had an issue with her eyes that would be addressed with surgery but that would be taken care of before she entered school most likely and that there weren't any other medical issues that I could think of. She rolled her eyes again, sighed loudly, and asked if she had Down syndrome. I said yes. She told me I should try to just answer the questions asked. I explained that I had answered exactly the question asked and that I did not think that her having Ds was an issue and I didn't appreciate the way the question was asked or the implication that there was something inherently wrong with her. Needless to say or write, I was not left with the impression that the public school is on my daughter's side or looking out for her best interests.

After some very fortunate chance conversations with a first grade teacher that works in our school district and a therapist from Brighton, I learned that these things were not true and that I did have more options. Both encouraged me to look into Brighton Center and also to acquire an advocate. I've signed up for some parent advocate training, am looking into finding an advocate for any future meetings, and called to tour Brighton Center.

Today I was scheduled to tour Brighton Center with the bear cub and look to place her on the waiting list for the transition class, a class geared to children that had not turned three and were learning the skills to make them successful in the classroom prior to entering preschool. When the bear cub and I showed up, she decided to show off. She was very friendly and waved to each staff member that she was introduced to. I was shown each room as we passed them and before going to the transition classroom, we were shown the pre-K 1 classroom full of 3 to 4 year olds. Once the door was opened, the bear cub immediately walked in and went to sit at the table and chairs were the children were making ornaments. The teachers told the class to say hi to her and they did and the bear cub said 'hello' back. This is something that we did not know that she would do. Before now, she has not said 'hello'. The children finished their ornaments which consisted of pushing cotton balls into a clear plastic bottle and then having the contents scented with some sort of oil. The bear cub resisted the teacher doing this hand over hand, but she was willing to choose to take the cotton ball out of my hand to do it herself.

After the craft, the children went to sit at circle time. The bear cub first decided to try out some of the other chairs at the table, but then very shortly went to join the circle trying to pull off the bib that I had put on her as she has been drooling lately. After I helped her get the bib off, she bounded into the middle of the circle and started dancing. She looked around and saw that none of the other kids was dancing and singing and then sat in the circle and started clapping and waving her hands along with them. They had a song where they were signing the alphabet and she was moving her fingers the same way that she does at home when we do the alphabet song (she can't quite sign any of the letters but she does try). While she was doing this, the staff that was giving me the tour told me that she seemed to fit with this group perfectly and that they would put her on the waiting list for Pre-K 1 instead of the transition class. I was so thrilled to hear this and agreed that I thought that was best.

After circle time, the children were getting their jackets on to go outside. The bear cub wanted to line up with them, but as I had left her jacket at the front of the building I figured it was time to leave them. I told the bear cub to say good-bye and she waved and signed 'Thank you'. The kids all said good-bye to the bear cub and one little girl came and told her good-bye up close and they hugged each other. The bear cub resisted leaving and was clearly unhappy to go and was signing play more on the way out.

The therapist told me that the big obstacle that the school would put in my path to having the bear cub have PPCD at Brighton Center was that they would not have a spot for her and I'm hoping that the bear cub will move to having a spot at about the same time that she turns three when she would normally start preschool(since we can't really afford to pay for the preschool for very long). I'm also attending my first parent advocacy training session tomorrow.

Wish the bear cub and me luck!

Siblings and Ds

This is a picture of the nerdlet meeting the bear cub for the first time. She has loved her sister from day 1, as much as a sister can love a new baby regardless of the number of chromosomes. I've posted on the benefits to a sibling of a person with Down syndrome, how studies show they are more compassionate and have better self-esteem and fewer instances of depression, but if you would like more info on the most recent studies, feel free to head over to The Chronicles of Ellie Belly Bear to learn more. Everyone should be lucky enough to have a family member with Down syndrome.

October is Down Syndrome Awareness and Down Syndrome Awareness Month

October is Breast Cancer Awareness Month and Down Syndrome Awareness Month. A lot of mom's blog every day in October about facts about Down syndrome. I won't be doing that, but I do want everyone to know how wonderful people and children are that have Down syndrome. People and children with Down syndrome are capable of doing almost everything that a person with a mere 46 chromosomes can do and there are a lot of misconceptions about them that I wish were not so I do plan on sharing at least a few posts. I also plan on sharing a bunch of pictures of my beautiful bear cub and some of her gifts.

In this picture, the bear cub just turned one.

Liam again

I spent the weekend at the National Down Syndrome Congress Conference. It was wonderful seeing so many people with a direct connection to someone with Down syndrome. If you don't have someone with Down syndrome in your intimate circle of family and friends, then you are definitely missing something. We like to say that our kids have something extra, but we could also say the rest of us have less, less hugs, less love, less acceptance, less peace, less understanding of what is important.

Amy understands this so much that she is adopting her fourth son with Down syndrome, Liam. She still needs $8K to be able to rescue him and bring him home. My younger sister is a Tastefully Simple representative and she is donating 100% of the profits of an online catalog party to Liam's adoption. Just go to the Tastefully Simple website and order delicious gourmet food products to help with Liam's adoption. Just list me 'Kimberly Hughes' as the host and my sister will make sure the profits are directed to Liam's adoption. This is the last week of the party will end on August 15th.

I saw a package of beer bread mix at my local grocery story and I couldn't help but have a bake off.

Both asked for 12 oz of beer and I used Corona light.

Although the package of Firenza makes an almost insignificantly smaller loaf and has slightly less dry ingredients, somehow it was a much drier loaf.

The Tastefully Simple bread mix was about the same price after shipping (cheaper without shipping), but it was much, much tastier. So if you like beer bread, buy it now through the catalog party. The spinach and artichoke dip and the Fiesta dip have been a hit at the two parties I have served them at. I also am very fond of the Almond pound cake.

As always you can skip the party food and donate directly to his adoption here, and donations are tax deductible.

Feeling a need to donate

If you have money burning a hole in your pocket, please go here to see a list of children that are currently still in institutions waiting to be saved but lacking funding. They are all beautiful children with Down syndrome. Donating directly to their adoption funds is tax deductible.

Another Liam's Adoption/Tastefully Simple Party Plug

As my readers know, my sister has agree to donate 100% of the profits of an online catalog Tastefully Simple party to Liam's adoption. What a deal - buy and enjoy gourmet food and feel good about helping save an orphan. Amy, the mother, has three other boys with Down syndrome, one of which is an adult, so she knows what people with Down syndrome are capable of. You can view her blog about her family here.

Today I made the beer bread, both regular and whole wheat (I just had to compare) and the potato cheddar soup.

I chose the Corona because it was one of the few I could just buy one of and I figured I could melt the bottle in the Kiln.

Oh, how I wish you could smell this picture.

Both beer breads are awesome. You can see in the picture that the wheat bread didn't rise as much and I was afraid it was going to be dense and awful, like wheat breads used to be in the past, but the flavors were incredibly similar, with the wheat having that nutty tastes that wheat breads are supposed to have, but still being sweet and airy. My house smelled like beer and I was thinking the whole time the bread was cooking that I should have used a soda or something other than beer, but the taste of both of the loaves was really good. I'm not really a drinker and I really dislike beer, but I heartily recommend these breads.

As for the soup, I'm not really a cheese soup fan and so this soup isn't really my thing. It IS much better than the dehydrated potato soups that I've tried from the grocery store, and I certainly like it enough to eat it, but it isn't good enough to convert me to choosing a cheese soup over something else. In short, buy the beer breads!

To order any of these or the biscuits from this post, go to Tastefully Simple and list me 'Kimberly Hughes' as the host and my sister will make sure the profits are directed to Liam's adoption. This party is going to run until August 15th. My suggestion is to order a few things you like to try now (most of it is great party food), then you will still have time to order again more of the things you really like before the donations are closed for this adoption.

As always you can skip the party food and donate directly to his adoption here, and donations are tax deductible.

Save Ivan/Liam!

Anyone that has been reading my blog for any period of time knows that I always have one or more adoption of a child with Down syndrome through Reece's Rainbow that I am watching. Melanie/Lucy's mom is at the orphanage getting her right now. Lera's adoption is fully funded and they are completing the final steps before they can go get her. Alexander's adoption is almost fully funded, and they are gung ho about going to get him even if no more money is donated, but they are having to wait for some issues with the political system in the country of Alexander's orphanage. So now I am advocating for Liam.

My sister is a consultant for Tastefully Simple. It is a company that sells gourmet food products that I had never heard of before she started selling it, but apparently is extremely popular because as soon as I start talking about it, everyone cuts me off having heard of it and obviously knowing more about it than I do. She has agree to do a fundraiser donating 100% of the profits of an online catalog party to Liam, who is still $9K away from being fully funded. Go to Tastefully Simple, pick out your products, and list me 'Kimberly Hughes' as the host and my sister will make sure the profits are directed to Liam's adoption. Liam's mom, Amy, has adopted multiple times before and if you go to her blog, you can see pictures of her three handsome sons that have Down syndrome.

Of course, if you don't eat or know anyone who eats, and therefore cannot fathom buying delicious food, then you can, of course, donate directly to Liam's adoption here.

Finally, a giant thank you to all those that have donated to this adoption or any of the others or who have already purchased. Every small amount counts.

Audrey's Day at the Beach

Saturday, Q and I took the bear cub and the nerdlet to Audrey's Day at the Beach, a meeting in Rockport of families with children or relatives with Down syndrome. We wanted to do this last year and the year before but family things kept us from going this year. We actually missed my nephew's eagle scout meeting to go this year and almost cancelled it again, and although it was a difficult decision for us, we decided that it was important for us to spend a day celebrating the bear cub's extra special chromosome with like families.

I often say that every family should have a child with Down syndrome. This trip really brought this feeling to a point. It was so wonderful seeing almost every family around you being blessed by trisomy 21. There were people on the beach that were not apart of our group. About 20 feet from us was one such family. The mother was smoking and the father was yelling at the two kids about how to properly build the sand castle to hold water. The two kids were working hard trying to please their dad. Watching them I kept thinking that there family was missing something, and to me it was obvious what it was.

The bear cub had a blast. She kept waiting for us to turn our backs and each time she did this.

We got to see dolphins, all kinds of birds, and George Strait's home.

Q and I spent a lot of time in the sand digging holes and making arches, which the girls loved.

On the way to and from the beach we got to see the wind farm in Sinton, TX, which I though was just beautiful and I couldn't get pictures that really captured the beauty of it. I would love to see these around my city all the time.

It really was a great trip and I hope to be able to take my family again in future years.

See Me For Me

Copied from Melissa'a wonderful blog.

See Me For Me

When you look at me -
What do you see?

When you look into my eyes
Do you see beautiful blue,
sparkling with joy, delight
in my accomplishments
Or do you see that "almond shape"
or "brushfield spots"?

When you look at my hands
Do you see them reaching
for toys, writing the alphabet,
throwing a ball, doing a
meaningful job
Or do you see a "simian crease"?

When you look at my face
Do you see the resemblance
to my parents, that I have just had
my hair permed
Or do you see a "flat face" or
"epicanthal folds"?

When you look at my behavior
Do you see my feelings of
pleasure and anger, my desire
to achieve, my frustration in
being treated like a baby
Or do you see the "stubbornness"?

When you look at my development
Do you see me playing with peers,
participating in sports, growing
into a productive adult
Or do you see "low muscle tone" or
"the eternal child"?


When you look at my family
Do you see loving parents wanting
to challenge me to my ultimate potential,
sisters and brothers who have a better
understanding of the differences in us all?
Or do you see a family torn apart by my
difference, constantly in crisis, unable
to accept, never to feel the joy of
having a "normal child"?

What Do You See?
Look At Me.
Look Closer.
See Me For Me.

World Down Syndrome Day

It's World Down Syndrome Day! Celebrate with your extra special someone that has a third copy of chromosome 21. Aren't blessed with knowing one of these wonderful people or don't know how to celebrate? You could donate to Lera's adoption fund at http://savinglera.blogspot.com/2011/03/lera-fundraiser.html?spref=fb.

Have a great day!

Spread the Word to End the Word

Imagine that your name is Jenn. You work for a business, you work hard, and you are good at your job. You've worked there for a while and there is a change in management and you think about leaving, but your husband has an accident and can't work, and you now need the job for the money and medical insurance. You meet your new boss but you're not sure about him, and a few weeks later you catch your boss in a big mistake on a presentation before a meeting. You tell him and immediately help him fix it and start running off new copies for the meeting. As you finish and head to hand off his copies, you overhear him telling one of his coworkers that the mistake was your fault and ending it with 'You know how that bimbo Jenn is." You think you must have misheard and try to let it go, but you overhear it again. Then you start hearing it more and more. It bothers you, but you aren't sure what to do about it. You decide to go to HR when he starts calling you it out right. HR tells you that it's just a word and it isn't hurting anything. You start looking for another job but you can't find one. After a few months you start hearing the word bimbo everywhere at work. You here is used as an insult for any little thing. "You're such a bimbo for that." "I can't believe I did that. I'm such a bimbo." While in the past, it might not have meant anything, now it does because you know it originated from your boss talking about you. After one of your coworkers uses it, you explain how it makes you feel and why and he agrees not to use it in the future, but other coworkers insist that it's not about you and that you need to get over it. You are miserable at work now and dread going into work every morning, but you are stuck with it. It's a hostile work environment.

Here is where this analogy to the word r*t*rd doesn't work. Jenn isn't a bimbo, but many people do have mental retardation. Bimbo isn't a hate word like n*gg*r, but the 'r' word is. Jenn can go home to her family and escape, but someone with an intellectual disability will still hear the 'r' word on tv, on the radio, and read it on the internet. People that use the 'r' word are creating not just a hostile work environment but a hostile life environment for those with intellectual disabilities.

People that insist on their right to use the 'r' word are like members of the KKK insisting they have the right to use the 'n' word. It's not just a word. It's not about being politically correct. Yes, you have the right, but it's hate language and its use is reprehensible. 3-2-11 Spread the word to end the word.

Ds and Abortion

In one of the Ds communities I belong to, a number of mothers with children with Ds expressed their wish for the Duggars to have a baby with Ds, so that people would see a family welcome a child with Ds into their home and see how wonderful our children are. They were flamed because of this and were told that is was abhorrent and other horrendous things. I wanted to express my feelings on this in a little more detail.

Ds is not a disease. It is not a defect. It is not a horrible condition. It is a chromosomal anomaly. It does not doom your child to anything. It is not abhorrent to want people to have children with Ds, it is just a wish, like any other. It is certainly not akin to wishing someone's child to have heart disease or be born extremely prematurely. A while ago, someone had likened the severity of Ds to that of balding and I immediately thought it was more like gender. How male or female is your child? Then I started wondering just how many genes are on the 21st chromosome. I attempted to look up the genetic difference between a female, a male, and a female with Ds. There are a lot of huge variations in the estimates. Because I no longer have free access to the medical sites that I did when I was working in the medical/drug field, I turned to the oh-so-trustworthy internet. I found that the government Genetics home reference site estimates that there are 70-200 genes on the y chromosome and there are 300-400 genes on the 21st chromosome.

As for wishing a child has Ds, I don't see too much difference from wishing that your child is male. A male child, like a child with Ds, has a higher chance of having medical problems than your female child. They have a higher chance of having learning disabilities and other non-medical issues. I would also liken it to wishing your child that has fair skin. There are a few advantages to having fair skin, like being able to see cancers and skin problems easier, but by far, having fair skin requires a lot of special care to prevent problems, like the stated skin cancer, wrinkling, or premature aging. Ds is the same, special care is necessary. The bald analogy is also apt. It is considered an undesirable trait, but there is truly nothing medically wrong about it and many people do find it attractive (I'm am certainly one).

I have also stated in the past that if you're not cut out to be a parent to a child with Down syndrome (or any other disability), then you're not cut out to be a parent at all. There are no special skills needed that are not required for any parent. If you are expending the necessary energy to ensure your child is achieving his or her potential, then you will find that no extra time or energy is required, and you might find that less is. The problem is (as one friend so eloquently put it) that some parents are good caretakers of their kids but not necessarily good parents.

There are a huge amount of advantages to having a child with Ds:
You can enjoy each stage of childhood longer.
People with Ds have as much as 50% less chance of getting all but one form of cancer and that form is the only one to spontaneously go away and it has an 80% survival rate.
They are not likely to be criminals or participate in criminal activities of any sort.
Siblings of people with Down syndrome are proven to be more compassionate than those without.
Parents of children with Down syndrome experience greater well being (less depression) than the general population.
Divorce rates in parents already married when a child with Down syndrome is born are lower than the general population.
People with Down syndrome tend to not attempt to lie or deceive others.
They have more compassion and empathy than the general population.
I'm certain that other mothers can certainly add to this list.

People with Ds can accomplish the same things that any other person accomplishes. They are in the National Honor Society. They get college degrees. They get married. They become Eagle Scouts. They have children. They are artists, musicians, actors, public motivational speakers, self-advocates, writers, businessmen, and so much else. They may not be neurosurgeons or aerospace engineers, but are other children really capable of that, and there is no telling what more acceptance would help them to achieve.

The way I see it is that there are 3 viewpoints about abortion. One is that abortion is murder and unacceptable. The second it that abortion is not murder and so there is nothing wrong with it. The last is that abortion is murder but that it is acceptable while the child is in the womb. I think that there are two viewpoints on aborting a child with Down syndrome. The first is that again abortion is murder and you should never murder a child regardless of any other point. The second is that it is okay to abort a child if you don't like its characteristics, whether it is a disability, gender, skin color, intellectual ability, sexual preference, propensity for a certain weight, or other undesirable trait. Abortion of a child with these traits is eugenics and something Hitler would certainly approve of.

I image that I've offended a number of people with this post and I imagine I might lose some facebook friends and readers by this post. I'm not interested in arguing the semantics of how I stated things, and unless you have some convincing arguement that my premise is wrong, I'm not going to respond. I just wanted to express that Ds isn't the end of the world, it is just the opposite, a beginning of a whole new one, and if you give it a chance you will find it to be a wonderful one. There is a reason that mothers of children with Ds band together and they all state the same thing regardless of ethnic background, religion, or beliefs on abortion (that our children are blessings and have just as much a right to be here as everyone else) and that is because we have experienced this blessing and know it to be true.

I have one last comment. Mothers of children are quick to be defensive of our little ones. There is a reason for this. It is because we experience bigotry against our children very early on. Sometimes before we have left the hospital we have heard horrible things against our babies. It isn't long before someone tells us that not only would they have aborted theirs, you should have aborted yours. You hear things like you shouldn't waste money on surgery or special care for your child, you should let them die if they have any problems at all. They are compared to dogs that should be put to sleep. Of course, we are quickly defensive.

No one is worth more or less than any other person, even one with Ds, and variation is what makes life interesting.